Please help!

[Santos82]

Hello all.

It is third time i change my endo.

Below attached are my test results in the tabular form. Graves disease started in Feb 2019. I have also mild THyroid eye disease.

Currently I am hypo due to Thyrozol 10mg medicine. My TSh is 6.

Previous endo: keep on taking the same dosage since we need to make sure that T3 & T4 stays within range and the TraB becomes less than 1. She advised me to take for additional 4 months. After that there would be a high probability to reach remission.

New endo: stop Thyrozol immediately and after one month we need to check the test result. She added that the thyrozol does not have any effect for the TraB. She also said to take probetol if the heart beat per minute is higher than 100. She said remission is not guaranteed.

I was surprised that the new endo has completely stopped thyrozol, i thought she would just deceased the dose, especially that I have been with graves disease for less than one year.

Which endo would you follow?

[elderflower2016]

I would not stay on the same dosage since you are hypo. Stopping altogether sounds a bit drastic too but if it is for a month before you check your bloods again, you would catch it if your thyroid hormones go back up. I would personally try reducing the dose and doing bloods again in a month.

[Kim327]

Hi,

I agree with the first response

I was diagnosed with Graves February too. I completely understand your frustration. I did switch Endos too because of it.

You are hypo now. My doctor tested me every 5 weeks and kept reducing my methimazole each time. I went from 2 - 5mg pills, then 1 a day. Then I went to 1 pill 5 days a week, the 4 days the 3 days then cut them in half 4 days then to 3 days.

I did go hypo but he didn’t want to stop me cold on meds just reduce my meds. I’m two weeks I went from over 3 TSH to 2.6 on 3 days half a pill.

I was just taken off and now have to see if my thyroid will go to 1 or just below in3 weeks.

I am not a doctor and don’t know your exact medical history as to why. Just thought I’d pass along my experience as to how I was medicated.

It’s very frustrating but hopefully you can find a good Endo that can help you!

Best of luck!

[elderflower2016 in reply to Kim327]

I responded based on my own experience too. I've been under treatment for a number of years now and have been adjusting my dose down little by little. I will try and come off the anti-thyroid meds at some point.

@santos82 It is good that your TSH normalised quickly and that your antibodies are going back to normal. Hopefully this may mean that you will go into remission soon.

[GKeith in reply to elderflower2016]

If you feel you've been under-treated, hypo, why would you adjust your thyroid meds down?

[elderflower2016 in reply to GKeith]

She is being over-treated if she is going hypo (TSH 6+) on her current dosage of anti-thyroid meds which she is taking to help with her hyperthyroidism, not hypothyroidism

[Lora7again]

I would stop it for a month and then re-test. When I did that I went into remission for 4 years and felt really well. My hair grew back, my nails re-attached and I stopped being a recluse etc. This disease gives you so many symptoms mine were, hair loss, a couple of nails dropped off, blurred vision, tinnitus and night sweats and numerous other things like joint aches etc. Now I could walk for miles and not feel tired because I have so much energy. My TSH is 0.70 which is slightly low but in range and it suits me because everyone is different. I don't know what my T4 or T3 is because the lab refused to test them because my TSH is within range. They should really do a full thyroid function test because I have Graves' but the NHS have their rules for us the neglected forgotten thyroid suffers ... we are not important enough to be helped or treated unless our TSH reaches 10 and by then we will feel extremely ill. I worked for NHS for many years as did my husband but they still get things wrong.